Monday, February 28, 2011

Sunday, February 20, 2011

Bella wants to be mobile. She is determined to figure out how to move. It’s so fun to watch her become. She has been on the vent more than off lately. I have been wondering of late what we will be working with once she is off the vent for good. What will she be like? A really bad asthma little girl? Will it slow down her development because she’ll have to spend so much effort and energy breathing? I’m just worried. I like where we are. The future, being unknown, is still frightening to me.

Meanwhile, her PT said to get a walker (the play kind, not the gait trainer). It gives her another position upright and where she can learn to move her feet and put weight on those little legs. Enjoy!

Sunday, February 13, 2011

Sweet Bella – ultrasound of her liver showed that it was enlarged. That wasn’t very surprising. It also showed that she has stones in her gallbladder. Ran that by her PCP who told me that it was up to GI, but they probably won’t do anything about it unless it causes a problem.

Had to stop in and see her PCP – we were not doing well and headed to sick. So two meds later, we are seeing an improvement. It has been really cold – and that wheezing. Ick. We got our hands on an inline passy-muir valve. Her other passy-muir valve she has to be off the vent to use. That just isn’t happening right now. But this one you can use while using the vent. Now that her antibiotics are kicking in her secretions are more manageable and she is able to use it! She loves to make noise! I about need a valium every time we use it, though. But I am getting used to it and she is getting used to it.

In other news, this kid is so excited to move! She is learning to dance – her version, a little wiggling of the shoulders and sometimes the trunk. So fun to watch! And that mat is coming through again. She is scooting – she is using momentum to scoot that little bottom across her mat to reach toys! So thrilling to witness!

Well, maybe I’m too close to see you clearlyOr is it now my role to simply believe?You’re just one of those mysteriesThat may never be solved in timeBut you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do itAnd Trevor will do what Trevor will do when Trevor is ready to do itAnd Lucy will do what Lucy will do when Lucy is ready to do itAnd they’ll do it in their own time